Head and Neck Cancer and the possible consequences.

Posted by 56tburd @56tburd, Mar 28 10:57am

I am a survivor of squamous cell carcinoma at the base of my tongue. I'm now 18 years out. Everyone seems to have the usual problems, and I'll tell you it can get better, or maybe I've just gotten used to it. However, I just read a recent article about the underdiagnosis of baroreceptor failure, and thought I should contribute my experience to make others aware of the possible side effect.

Eight years ago, while taking my BP after experiencing a mild headache, I thought my cuff was broken. My BP had always been good, and there had never been an indication I was having problem. I went to Urgent care to have my cuff checked, and my BP was still in crisis stage. They escorted me to the ER. The Dr kept asking me why I wasn't being treated by my PCP. $4,500 later, I was diagnosed with baroreceptor failure.

I was told by the cardiologist who made the diagnosis that I'd have to learn to live with it. Another told me I wasn't their bread and butter, but he did refer me to a "fall" clinic due to the syncope I was experiencing. No one see to have an answer on how to treat this. I quickly learned that taking BP pills is a crap shoot. You keep trying until you find something that works. Unfortunately, there are a lot of side effects you have to deal with in the interim.

It's been a real experience trying to manage the problem. I'm either over medicated and repeatedly crash, or undermedicated and the spikes are frequent. Hypotension has the worst symptoms, especially when my BP drops down below 80/50. My vison blurs, and I feel like I've been run through the ringer. However, it is the hypertension that does the most damage.

I've experienced a dilated aorta, thickening of the heart walls, possible lung scarring, and who knows what else. I track my BP several times/day and medicate accordingly. Metoprolol, combined with hydrochlorothiazide, was effective in reducing the hypertensive spikes without too many hypotension incidents. Unfortunately, I developed a serious cough with it and had to stop. I'm currently taking Losartan, 10mg, along with the Hydrochlorothiazide, 12.5-25mg, as needed. The peaks and valleys are still significant, but not as severe, for the most part.

It is unclear whether it was the radiation or the surgery that caused the problem, but I believe it is imperative if anyone goes through such treatment, they monitor their BP to catch the problem early. I wasn't made aware of the problem as I think it wasn't well understood by caregivers. Good luck to you all.

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

Good, helpful post! I was never aware of the baroreceptors (blood pressure sensors) in the human body until my dad had a stent placed in his carotid artery. There are a lot of baroreceptors in the carotid sinus, and apparently the surgery sorted of stunned or disoriented the ones in my dad. Hospital staff spent most of the night and half the next day trying to get his BP stabilized, which they finally achieved. I could see now how permanent damage to one's BRs could be really complicated to deal with. Good luck to you as well, @56tburd .

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One thing I forgot to mention is to watch for supine hypertension. I've been recording my BP for years, but I never thought to check it at night until I started waking up with pulsatile tinnitus. It was then I discovered that my BP wasn't as stable as I'd thought. The only solution I've found for it is sleeping upright in an adjustable bed, making sure my heart is above my feet. Slipping down in the bed tends to negate the benefit. Most of the efforts I've made only reduce the incidents, or their severity. I don't believe there is a cure, but with monitoring, I hope to keep the effects to a minimum. Stay vigilant.

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My husband finished treatment for neck cancer in 2010.He started having bp problems about 8 or 9 years ago. He was put on meds for high blood pressure. Fast forward to beginning of this year. He passed out in our kitchen after getting up and walking from bedroom. We live in a major Midwest city but doctors could not figure out problem. Cardiologist said not a cardio problem. Neurologist said not neuro. I started research and found article regarding long term side effects of radiation on head and neck cancer survivors. Not one doctor had ever dealt with this before and we sought out(not easy) an autonomic specialist in Indianapolis. From there we went to Mayo for second opinion. Both diagnosed baroreflex failure. My husband has had 3 seizures due to his bp going so high. He has doctors stymied because his bp can drop over 100 points after standing yet he is asymptomatic. His quality of life seems to lessen each week.
I mentioned Mayo agreed with diagnosis. But I asked doctor at Mayo if he would have started my husband on meds Indy dr had. He said no but didn’t want to”to rock the boat.” Maybe it’s too soon to tell (it’s been a little over a month), but I feel the boat may be sinking.

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@thare

My husband finished treatment for neck cancer in 2010.He started having bp problems about 8 or 9 years ago. He was put on meds for high blood pressure. Fast forward to beginning of this year. He passed out in our kitchen after getting up and walking from bedroom. We live in a major Midwest city but doctors could not figure out problem. Cardiologist said not a cardio problem. Neurologist said not neuro. I started research and found article regarding long term side effects of radiation on head and neck cancer survivors. Not one doctor had ever dealt with this before and we sought out(not easy) an autonomic specialist in Indianapolis. From there we went to Mayo for second opinion. Both diagnosed baroreflex failure. My husband has had 3 seizures due to his bp going so high. He has doctors stymied because his bp can drop over 100 points after standing yet he is asymptomatic. His quality of life seems to lessen each week.
I mentioned Mayo agreed with diagnosis. But I asked doctor at Mayo if he would have started my husband on meds Indy dr had. He said no but didn’t want to”to rock the boat.” Maybe it’s too soon to tell (it’s been a little over a month), but I feel the boat may be sinking.

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I'm sorry to hear your husband has been going through this. I know this is trying for both him and you. I had no idea there was any problem until I had a headache from a BP in crisis stage. It took a year and a lot of money to get to the bottom of this for me. They put me on BP meds and a water pill, which have their own side effects that turned my life upside down. I've experienced syncope, blurred vision, and an awful feeling when my BP drops out. I've done several face plants from weakness and blacked out once. I'm going in for a heart ECHO to see if my ascending aorta has dilatated further. Occasionally I get headaches when it spikes. I've dropped some supplements, changed my diet, and exercise more. I monitor my BP multiple times a day and medicate accordingly. Currently, I'm on 10mg Losartan, and fluctuate between 12.5mg and 25mg of hydrochlorothiazide. This has greatly reduced the number of incidents during the day. Nighttime is another issue. Currently, I am experimenting with my sleep position as I find when my feet and heart at the same level, I experience hypertension. I have Hydralazine on hand when it goes into crisis stage. All of this is time consuming and annoying, but better than staring up at dandelion roots. I'm not saying this regime will work for everyone, but it is helping me, at least to feel like I have some control. It appears most doctors are unaware of the side effects of head and neck cancer treatment, but I've read studies drawing attention to the problem, so awareness may grow. I posted here just to bring it to attention of those who are looking for answers. Hopefully, your husband will find his.

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@56tburd

I'm sorry to hear your husband has been going through this. I know this is trying for both him and you. I had no idea there was any problem until I had a headache from a BP in crisis stage. It took a year and a lot of money to get to the bottom of this for me. They put me on BP meds and a water pill, which have their own side effects that turned my life upside down. I've experienced syncope, blurred vision, and an awful feeling when my BP drops out. I've done several face plants from weakness and blacked out once. I'm going in for a heart ECHO to see if my ascending aorta has dilatated further. Occasionally I get headaches when it spikes. I've dropped some supplements, changed my diet, and exercise more. I monitor my BP multiple times a day and medicate accordingly. Currently, I'm on 10mg Losartan, and fluctuate between 12.5mg and 25mg of hydrochlorothiazide. This has greatly reduced the number of incidents during the day. Nighttime is another issue. Currently, I am experimenting with my sleep position as I find when my feet and heart at the same level, I experience hypertension. I have Hydralazine on hand when it goes into crisis stage. All of this is time consuming and annoying, but better than staring up at dandelion roots. I'm not saying this regime will work for everyone, but it is helping me, at least to feel like I have some control. It appears most doctors are unaware of the side effects of head and neck cancer treatment, but I've read studies drawing attention to the problem, so awareness may grow. I posted here just to bring it to attention of those who are looking for answers. Hopefully, your husband will find his.

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Tom takes 200 mg of Droxidopa in the morning and 100 mg in the afternoon. That is to keep his standing bp up. He would have reading of 70/40 and with Droxi it keeps at 90 or low 100.
Bedtime is the worse. That is when he has gone into crisis. He’s been as high as 242/120….seizing.
Now he takes 100mg of Losartan an hour before bed. Mayo suggested putting head of bed on 6” risers so he sleeps on a slant. Just started Losartan last week. Check his bp twice during night. Haven’t had a trip to ER in 2 weeks, so hoping it works.

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I feel for your husband, Tom. I experienced a BP reading nearly that low, and it was very unpleasant. I believe my orthostatic hypotension was caused by the BP meds. I'm using an adjustable bed to find what will work for me. A 6" rise might be all it takes. I hope he finds the meds that work soon.

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I also have Baroreflex failure that has been diagnosed by a cardiologist and Electrophysiologist. I researched this diagnosis May 2023. I had bilateral Thyroid cancer in 2001 and 2008, total thyroidectomy . Brain stem stroke in 2017. My bp started surging
in 2022 because of severe personal stress and severe surges again in 2024 because of personal stress. My bp has severely flucuated since then. I'm very sensitive to medications that I've taken in the past. All I can tolerate is Atenolol 25mg that are split in half , because this bp medication isn't time released. I take Atenolol 12.5 mg as needed on a daily basis to somewhat help my bp come down. Bp fluctuates from one hour to the next or several hours later, I have to monitor bp a lot during every 24 hours.

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@thare

My husband finished treatment for neck cancer in 2010.He started having bp problems about 8 or 9 years ago. He was put on meds for high blood pressure. Fast forward to beginning of this year. He passed out in our kitchen after getting up and walking from bedroom. We live in a major Midwest city but doctors could not figure out problem. Cardiologist said not a cardio problem. Neurologist said not neuro. I started research and found article regarding long term side effects of radiation on head and neck cancer survivors. Not one doctor had ever dealt with this before and we sought out(not easy) an autonomic specialist in Indianapolis. From there we went to Mayo for second opinion. Both diagnosed baroreflex failure. My husband has had 3 seizures due to his bp going so high. He has doctors stymied because his bp can drop over 100 points after standing yet he is asymptomatic. His quality of life seems to lessen each week.
I mentioned Mayo agreed with diagnosis. But I asked doctor at Mayo if he would have started my husband on meds Indy dr had. He said no but didn’t want to”to rock the boat.” Maybe it’s too soon to tell (it’s been a little over a month), but I feel the boat may be sinking.

Jump to this post

This is interesting; I have bone cancer, and it’s heavily invested in my thoracic vertebrae. These vertebrae are pushing on the trigeminal neurolgia nerve. This results and nothing but pain. Worth reading about and being aware of. I currently treat my with doctor prescribed drugs same for my cancer. 32 pills a day, which I don’t take all of because it just seems wrong.

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No one mentioned the consequences of treatment of cancer in 2006. I was told it wasn't important. I just had to decide whether I wanted to live or die. There were definitely consequences. What they did tell me was that the radiation treatment could result in future cancers 20 years out. I'm now in year 19. When you start recovering from cancer, you are always looking over your shoulder, wondering if this or that is an indication of it coming back. After 10 years I started to relax, being reassured that if it did, it was a "new" cancer now; a real confidence booster. At least now, in my late 60's, I've lived a good life, have grandchildren who will remember me, and am more comfortable with my mortality. I hope not to test my convictions any time soon.

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This is a very interesting discussion @56tburd. I was not aware of this issue with head and neck radiation. It sounds like a lot of physicians are also unaware of baroreceptor failure as a complication down the road. Radiation is the gift that keeps on giving. Thank you for sharing this valuable information. I think it has the potential of helping many patients who may not have been diagnosed. I wish all of you sufferers success with your treatments and hope that more research uncovers better control strategies.

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